Too soon for Remicade?

[secondday]

My son was diagnosed with CD in March. He's 11yo, has stunted growth and was suffering from stomach pain, fatigue & constipation. We live in Italy and his doctor put him right on Modulem with NEC as a suppliment to help the taste. My son was on the liquid diet for 8 weeks and began adding solid food about a month ago. He still has inflammation but it was reduced by half. He no longer has any stomach pain or fatigue and his appetite is back. I've started him on SCD in hopes of allowing him to heal without strong medication. He now eats a solid diet of select foods, drinks a ltr of Modulem a day, and takes an anti-inflammatory with each meal. But he's not gained any weight. (I thought he had gained a couple pds but yesterday morning he weighted himself and his weight was back where he started.) His doctor wants to put him on Remicade. It seems like such a dramatic response. We head back to the states in a couple months so I'm thinking perhaps we'll wait until we move to take the next step. But still I worry. My son's an identical twin and his brother is 3 inches taller and 15 pds heavier

 

[Sascot]

Hi, welcome to the forum. Sorry to hear about your son, it is a difficult thing to come to terms with. It is so hard being asked to make decisions about these medications! I sympathise, as my son was doing quite well after the Modulen and I found it hard to agree to put him on the Aza.
Remicade seems a very strong med, but I have read around the forum and it seems alot of doctors are now doing the top down approach - using the stronger drugs first to get every thing under control and then workind down to the others. Good luck with your decision, hope whatever it is, it works well for him!

 

[AZMOM]

Hi secondday. I'm sure you've been doing a lot of reading. From the discrepancy between the kids in size, I'm sure your son is not absorbing what he needs from the food and it's affecting his growth. Love his heart.....

The biological decision is a tough one. Sascot is right that the "top down" approach is used by a lot of docs. But I don't blame you for not wanting to start just before a move. Has the doctor talked about a short course of steroids and using either 6mp or azathioprine? Might be a stop-gap for you until you get settled. And all kids eat on steroids.

Like Sascot said, I hope whatever you decide gives him remission!!! Ask lots of questions and go the direction you think is best.

Hugs, (and welcome)

J.

 

[Jenn]

So sorry to hear about your son. I sympathize, my son is the same way with malabsorption, dx two years ago and now 10. We tried 6mp and though it helped, never put him over the edge and he developed a new fistula. In hindsight, it was a waste of time. He responded to Remicade within a week and gained a lot of weight quickly. It was great while it lasted, but he built antibodies to it. It's a scary medicine to consider, especially when you read the black label warning. The only comfort for me was that not treating is worse, going slower is sometimes worse. Agree with earlier posts, the current thinking is top-down, go aggressive early on so kids near puberty don't miss growth spurts and it helps avoid complications for longer. Be sure to discuss your concerns with your doctor and read up all you can so you can feel comfortable with these hard decisions. My son never liked the IV, but the lab nurses were great and it was only once every 8weeks (after the loading doses) and having him looking and feeling normal was priceless. Good luck to your son!

 

[jmckinley]

Sorry to hear about your son. It really is tough to make these decisions. We have been pushed into a corner with them recently also. I agree with Jenn. Our GI really stresses how important it is to get things under control so they will gain weight and to minimize damage to the GI tract. We did 6mp for 2 years and got remission, but he didn't gain much weight falling into the 10% range in weight, but 50% in height. His body wants to grow, the height, foot growth, voice changes, etc are all there, but he just won't absorb. 6mp no longer works for us now and we are doing Remicade.

I hope you find a treatment that works and gets him growing!

 

[columbuscrohns]

The top-down approach is supported by studies in the past couple of years and is being used increasingly. If you search on "top down crohn's disease" you should find some credible sources. The reasoning is consistent with this quote from David Rubin, MD, associate professor of medicine, co-director of the University of Chicago Medicine’s IBD Center: “Patients and doctors are nervous about immune suppressive therapies. The perception in the current treatment algorithm is that the therapies saved for last must also be the most dangerous, but that’s the wrong thinking, and by delaying their prescription it may be a self-fulfilling prophecy because by then patients have suffered more damage to their bowels and are less likely to respond favorably.”

 

[secondday]

We've decided to go ahead with the Remicade. We're meeting with the doctor tomorrow. He wants my son to receive 3 shots of steroids before the procedure. And because we're in Italy, we'll be giving him the shots at home. (My husband's going to have to take charge of that!) I'm working to get a new doctor in line in the states, because I don't think we'll be here long enough to do the full round of three injections before we move. Thanks everyone for your words of wisdom. It helped me get a stronger grasp on the situation and settle on what's best for my boy.

Susan V

 

[Clash]

Good luck with the Remicade. I hope it works well for your son. My son had to start Remi right away also. He was put on steroids to no effect, while we set up Remi schedule and went through ins. approval. It really has worked well for him, fingers crossed it continues to do well!! Hope your son gets some relief soon!

 

[JohnL]

I hope your son get better. It seems like a really hard decision to make, but you may as well trust your doctors, that's what they think is best. It seemed impossible for my little bro too...but sometimes extreme circumstances call for extreme measures. Good luck!

 

[DustyKat]

Hi secondday,

I'm so sorry to hear about your boy and all he has been going through...:hug:...what a heartbreaking time for you all and the decisions!...ugh.

You have already had fab advice and info about the reasons why some GI's go the top down route so I won't go there again. :lol:

Good luck with the treatment hun, I hope all goes well and your son soon has lasting peace and relief.

Dusty. xxx

 

[secondday]

We're back from seeing the doctor this morning. I expected to set up the first Remicade appointment. Instead we were told that his labs show that he's no longer inflamed. And he's gained almost 2 kilos! Instead of Remicade he's going to have a month on the steroid Medrol and continued use of Azathioprine. I'm not excited about the steroid but am very pleased that his time on the liquid diet proved to be so successful.

Thanks again for all your kind words and advise. I've felt like I've been on an emotional rollercoaster and you've all been a real help. Now I need to start researching these new drugs.

Susan V

 

[DustyKat]

Thanks for the update Susan.

So fab to hear that the inflammation has settled and he is gaining weight! anda:

Did they say what their reasoning is for putting him on Medrol when he is no longer inflamed?

Dusty. xxx